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All Children Are Special

Information and support for children with birth defects and their families. See section for resources in San Diego included below. (Headings are in alphabetical order.)

Albinism

• National Organization for Albinism and Hypopigmentation, a volunteer organization for persons and families involved with the condition of albinism.

Anemias

• Cooley Anemia (Beta Thalassemia)
• • Cooley's Anemia Foundation, funds medical research, patient services, public information, and professional education.
• Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency
• • Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency, a web site for a general lay audience (with some biology background) on the genetic, physiological, molecular, and clinical aspects of this common hematologic disorder.
• Sickle Cell Disease
• • Harvard Joint Program in Thalassemia & Sickle Cell Disease.
  • Hertz Nazaire's Sickle Cell Disease Patient Page.
  • Pediatric Sickle Cell Clinic, SUNY Health Science Center at Brooklyn, NY.
  • Sickle Cell Disease AHCPR Guidelines.

Angleman Syndrome

• Angle Down Under.
• AngleMAN Mailing List, for caregivers of people with Angleman Syndrome.
• AnglePRO Mailing List, to facilitate communication among medical, scientific, therapeutic and education professionals involved in the diagnosis, study, treatment and education of individuals with Angleman Syndrome.
• Angles Among Us ... Angleman Syndrome Information.

Anorectal Malformations

• Pull-thru Network and Mailing List, a non-profit support and resource organization dedicated to the families of children who have had or will have "pull-through" anorectal surgery

Apert Syndrome

• Apert Mailing List.
• Teeter's Page, a site on Apert syndrome.

Arthrogryposis Multiplex Congenita

• AVENUES, A National Support Group for Arthrogryposis Multiplex Congenita.

Ataxia-Telangiectasia

• A-T Children's Project's Information System.

Biliary Atresia

• Biliary Atresia & Liver Transplant Network, Inc., including the "Biliary Tree" newsletter for families and medical professionals.

Carbohydrate-deficient Glycoprotein Syndrome

• Carbohydrate-deficient Glycoprotein Syndrome Parent-to-parent Forum.
• CDGS Family Network (carbohydrate-deficient glycoprotein syndrome support).

Cerebral Palsy

• C-PALSY Mailing List on cerebral palsy.
• Cerebral Palsy: A Guide for Care, excepts from a book on CP, provided by the Cerebral Palsy Program of the Alfred I. DuPont Institute.
• Cerebral Palsy, a tutorial for children and parents from the University of Virginia.
• Cerebral palsy support group, through Usenet.
• CPPARENT Mailing List, for parents of children with cerebral palsy.
• United States Cerebral Palsy Athletic Association, to provide individualized sports training and competitive opportunities for athletes with cerebral palsy or related challenges.

Charcot-Marie-Tooth Disease

• Charcot-Marie-Tooth Disease (CMTnet).
• Charcot-Marie-Tooth Chat Room, provided by the Massachusetts General Hospital.

CHARGE Syndrome

• CHARGE Syndrome Foundation, Inc..

Chiari Malformation

• Chiari Malformation page at Columbia-Presbyterian Medical Center in New York City.
• World Arnold Chiari Malformation Association.

Craniofacial Anomalies

  Craniosynostosis, Cleft Lip, Cleft Palate, Crouzon Syndrome

• AboutFace, an international organization which provides information and emotional support to individuals with facial differences and their families.
• American Palate-Craniofacial Association and Cleft Palate Foundation , a professional association (and its public service affiliate) of individuals involved in treatment and research of craniofacial anomalies.
• CTTEEN Mailing List for teens and young adults with cleft palate and/or lip and/or other craniofacial anomalies.
• CLEFT-TALK Mailing List for people afftected by facial clefts.
• Craniofacial Anomalies from Columbia-Presbyterian Medical Center, including a pictorial guide to craniosynostosis.
• WideSmiles for parents of cleft affected children.

Cri du Chat Syndrome

• Cri Du Chat Syndrome Support Group.

Cystic Fibrosis

• CF-WEB.
• Cystic Fibrosis Foundation.
• CYSTIC FIBROSIS Mailing List for cystic fibrosis support (France).
• CYSTIC-L Mailing List, on the holistic impact of cystic fibrosis.
• Sweat Chloride Test information from the University of Wisconsin.

Cystic Hygroma

• Baby A.'s Mystery (Cystic Hygroma).

Cystinosis

• Cystinosis information from the University of California at San Diego.

Down Syndrome

• Bit.Listserv.Down-Syn, a Usenet newsgoup that mirrors the DOWN-SYN mailing list.
• DOWN-SYN Mailing List.
• Down Syndrome page, compiled from contributions of members of the Down Syndrome Listserv.
• Down Syndrome Alternative Medicine Mailing List.
• Down Syndrome: Health Issues, by Len Leshin, MD, FAAP. Information for parents and care providers on Down Syndrome.
• Down Syndrome Quarterly, a print journal (subscription information). Also includes guidelines for health care of people with Down syndrome.
• Family Empowerment Network, for parents of children with Down syndrome.
• National Down Syndrome Society.
• Position Statement on Atlanto-Axial Instability from the Professional Advisory Committee, National Down Syndrome Congress.
• UPSIDE! Down Syndrome Society an informal society of individuals, parents, and friends involved with the world of Down Syndrome.

Dwarfism & Achondroplasia

• DWARFISM Mailing List.
• Little People of America, including a newsletter for teens with dwarfism.
• SKELDYS Mailing List, an unmoderated mailing list for Skeletal Dysplasia specialists, sponsored by the International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center, Los anglees, CA.

Epidermolysis Bullosa

• Dystrophic Epidermolysis Bullosa research Association of America, Inc.

Familial Dysautonomia

• Familial Dysautonomia.
• FD-NET, for families dealing with familial dysautonomia.

Fetal Alcohol Syndrome

• Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment by the Committee to Study Fetal Alcohol Syndrome of the National Academy of Science.
• Fetal Alcohol Syndrome movie from Weber State University, Ogden, UT.
• Fetal Alcohol Syndrome Resource and Materials Guide from The Arc of the United States.
• Montana Fetal Alcohol Syndrome/Effects Program, a Special Focus Program of the Department of Medical Genetics, Shodair Hospital, MT.

Fragile X Syndrome

• Fragile X Advocate, a publication on insights, current research, and practical information on individuals with fragile X syndrome and their families.
• FRAXA Research Foundation Home Page, supporting research aimed at treatment for Fragile X Syndrome.

General Information (all, multiple, or various conditions)

• PEDINFO: A Pediatrics WebServer -- very good web site.
• National Center for Biotechnology Information

Glycogen Storage Diseases

• Association for Glycogen Storage Disease, Edinburgh.
• GSDNET Mailing List for families, individuals, and professionals with an interest in glycogen storage disease.

Growth Failure/Short Stature

• MAGIC Foundation for Childrens Growth to help children whose physical growth is affected by a medical problem.

Heart Diseases, Congenital

• CliniWeb: Congenital Heart Defects. Resources indexed.
• Congential Heart Disease Information and Resources form the Children's Health Information Network.
• PCNURSE Mailing List, restricted to nursing professionals who work with infants, children, or adults with congenital heart disease. To subscribe, send the message "subscribe pcnurse" to majordomo@tchin.org.
• PDHEART Mailing List, a support group for parents of children with heart disease.
• Hypoplastic Left Heart
• • HLHS Mailing Listfor families of children with Hypoplastic Left Heart Syndrome and interested health professionals.
• Tetralogy of Fallot
• • Tetralogy of Fallot from Tulane's Cardiology Almanac.
• Ventricular Septal Defect
• • Ventricular Septal Defect Course from Health Interactice. A course targeted at nurses, other health professionals, and parents covering VSD physiology.

Hirschsprung's Disease

• American Pseudo-obstruction and Hirschsprung's Disease Society, Inc.

Hydrocephalus

• HYCEPH-L Mailing List for people with hydrocephalus, their friends and family members, health care professionals, and anyone else with an interest in the condition.
• Hydrocephalus Association Homepage, including a hydrocephalus fact sheet.
• Hydrocephalus Support Group of Central New Jersey.

Immune Deficiencies including Severe Combined Immune Deficiency

• The Jeffrey Modell Foundation, a non-profit research foundation devoted to primary immune deficiency.
• SCID Homepage, a web site intended to form a loose support group for families dealing with severe combined immune deficiency.

Klippel-Fiel Syndrome [Sequence]

• Klippel-Feil Syndrome Connection designed to provide information about KFS and related anomalies.

Leukodystrophies

• Metachromatic Leukodystrophy from Duke University.
• United Leukodystrophy Foundation with information on such disorders as adrenoleukodystrophy, Canavan disease, Krabbe's globoid cell leukodystrophy, and Pelizaeus-Merzbacher Disease.

Lissencephaly

• Lissencephaly Network, Inc. for the parents, siblings, physicians, and therapists of children born with lissencephaly.

Marfan Syndrome

• Alt.Support.Marfan, a Usenet newsgroup.

Muscular Dystrophy

• Alt.Support.Musc-Dystrophy, a Usenet newsgroup.
• Australia Muscular Dystrophy Association.
• Duchenne Muscular Dystrophy Center at the University of Pittsburgh School of Medicine.
• Muscular Dystrophy Mailing List .

Noonan Syndrome

• NOONAN-SYNDROME Mailing List, operated by the Noonan Syndrome Support Group for anyone affected by this congenital syndrome.

Neurofibromatosis

• National Neurofibromatosis Foundation.
• Neurofibromatosis, a support page for people affected by NF.

Phenylketonuria (PKU)

• PKU News from the National PKU News.
• PKU Support Group of Florida.

Prader-Willi Syndrome

• Prader-Willi Connection.
• The Prader-Willi Foundation on the Internet.
• Prader-Willi Syndrome Association (USA).

Retinoblastoma

• R-BLASTOMA Mailing List on retinoblastoma

Rett Syndrome

• International Rett Syndrome Association.
• RETTNET Mailing List, for parents and professionals on the many facets of Rett syndrome.

Rubinstein-Taybi Syndrome

• Rubinstein-Taybi Syndrome, from a parent's perspective.

Russell Silver Syndrome...see Dwarfism & Achondroplasia above.

San Diego Resources

• The Arc of San Diego...Providing service for people with developmental disabilities and their families since 1951.
• The Unofficial Home Page of the Down Syndrome Association of San Diego

Spina Bifida (Spinal Dysraphism)

• Allegheny General Hospital Spina Bifida Center.
• BIFIDA-L Mailing List.
• Children with Spina Bifida Children with Spina Bifida - A Resource Page for Parents.
• Lumps, Bumps, and Holes: A Primer on Occult Spinal Dysraphism. CME credit for physicians is available for this tutorial.
• SB-Parents Internet Mailing List, a forum for people (mostly parents) interested in the care of children who have spina bifida.
• Spina Bifida Association of Western Pennsylvania.
• Spina Bifida information.
• Spina bifida support group through Usenet.

Stickler Syndrome

• Dave Hawley's Stickler Syndrome Page.

Tourette Syndrome

• Alt.Support.Tourette, a Usenet newsgroup.
• Massachusetts Chapter of the Tourette Syndrome Association.
• Tourette Syndrome Mailing List.
• The Tourette Syndrome Home Page.

Treacher Collins Syndrome

• Treacher Collins Network.

Trisomies and Other Chromosomal Defects

• SOFT, the Support Organization for Trisomy 18, 13, and Related Disorders.
• Chromosome 18 Registry & Research Society. To foster support and research into Trisomy 18, 18q-, 18p-, Ring 18, and Tetrasomy 18.
• Trisomy 21... see Down Syndrome above.

Tuberous Sclerosis

• Cody & Jordan's Page, on Tuberous Sclerosis.
• National Tuberous Sclerosis Association.
• TSCTALK (Tuberous Sclerosis Complex Talk) Mailing List for those affect by Tuberous Sclerosis and their families and friends.
• Tuberous Sclerosis International.

Turner Syndrome

• Alt.Support.Turner-Syndrome, a Usenet newsgroup.
• Turner's Syndrome Society of the United States.
• UK Turners Syndrome Society.

• Urea Cycle Disorders

• National Urea Cycle Disorders Foundation.

Velo-Cardio-Facial Syndrome

• Velo-Cardio-Facial Syndrome Educational Foundation.

Williams Syndrome

• Canadian Association for Williams Syndrome.
• Williams Syndrome Information from Tulane 's Hospital for Children.

Wolf-Hirschhorn (4P-) Syndrome

• Wolf-Hirschhorn (4P-) Syndrome, for parents of children with WHS.

X-Linked Myotubular Myopathy

• X-Linked Myotubular Myopathy Resource Group for parents and medical professionals.

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